The Life Raft Group (LRG) started in 2000, when a handful of patients in the early Gleevec trials began sharing their experiences online. Many patients had been misdiagnosed with leiomyosarcoma and were just now finding out they had an entirely different cancer – gastrointestinal stromal tumor, or GIST. Sharing their stories and experiences online helped them in a variety of ways, including gaining much-needed support while facing a rare disease and managing the side-effects of a new drug. In the next two years, this group formed a newsletter and Web site to share information with an even wider audience, before formally incorporating in June 2002. Over the years, The Life Raft Group has grown immensely, meeting the challenges facing GIST patients and caregivers and the research community every step of the way.
Our Mission and Vision
The Life Raft Group is committed to enhancing the survival and quality of life for people living with Gastrointestinal Stromal Tumor (GIST), and other rare diseases, through patient-powered research, education and empowerment, and global advocacy efforts. Our vision is to empower a future fueled by data, guiding our journey toward cures for rare diseases.
Diversity, Equity, and Inclusion Goals
We aim to provide research, education, advocacy and empowerment for all GIST patients regardless of socioeconomic status and other factors that might marginalize patients. Our vision and mission reflect our fundamental belief that all people belong and deserve fairness, justice, and inclusivity. We accomplish this through:
- Research studies based on our diverse population in our patient registry.
- Programming by providing scholarships to those who cannot afford to travel to in-person meetings, making reasonable accommodations when necessary for those with communication challenges, and through outreach via patient advocates and GIST mentors to patients in underserved communities.
- Advocacy efforts by assisting patients from the U.S. and countries across the world to have equal access to GIST treatment and medication.
- Educational programs, publications and website by posting regularly about opportunities to reduce costs of healthcare services and ensuring we disseminate information from every webcast, event, or meeting we attend/host.
We strive to foster diversity in our workplace and our Board of Directors and Medical Advisory Board, celebrating the qualities that make each individual unique, including race, ethnicity gender, age, sexual orientation, ability, religious affiliation, national origin, gender expression and other identities.
We are committed to aligning our culture and practices to be a beacon of diversity, equity, inclusion, and belonging for all people.
Our Budget and Operating Philosophy
The LRG became a 501(C)3 non-profit corporation, in the State of New Jersey, on June 10, 2002. Our fiscal year is the same as the calendar year. The Life Raft Group budget is adapted after formal approval by its Board of Directors.
Our philosophy is to have a transparent budget with professional checks and balances, and to focus our limited resources on those services most vital to the survival of GIST patients.
All contributions are acknowledged in writing, as required by the IRS. We accept no revenue from advertising. Each year we file federal form 990 to the IRS, as required by law for non-profit organizations. Copies of this form can be found on our website after they have been submitted. In addition, The Life Raft Group has retained the CPA firm of Sobel & Co., LLC of Livingston, NJ to conduct an independent financial audit each year and will make a copy of these reports available upon request. This audit is performed on a pro bono basis. We also welcome questions. Read more…
Please click here to see our Annual Report Database
Small, Paid Core Staff: Although we rely heavily upon a growing number of dedicated and skilled volunteers, our experience is that we also need to support a small, paid core staff to provide coordination and consistency and to make sure that actions needed to ensure the survival of GIST patients do not go unmet while we are waiting for a volunteer to assume and carry out that responsibility. We simply cannot afford the lethal time gaps that sole dependency upon volunteers creates.
Membership in The Life Raft Group is free, as is access to our website, newsletter and office-based assistance programs. Our support comes from corporate and individual donations.
Survival Strategy: GIST is a deadly and rare disease that has attracted little interest except for breakthroughs in genetic modeling and the discovery of Gleevec a decade ago. Despite the recent attention brought about new targeted therapies, GIST remains a rare disease that does not attract enough research interest either from government or the pharmaceutical industry. Many GIST patients in the world develop resistance.
The LRG has a simple focus: to cure a form of cancer — GIST – and to help those living with it until then. To do this, The Life Raft Group focuses on three key areas: research, patient support & education, and advocacy, which lay the foundation of our mission to ensure the survival of GIST patients through a comprehensive approach connecting individual patients’ needs, the worldwide community of GIST advocates and the global health and research environment.
Confidentiality and Privacy
The LRG does everything possible to protect the confidentiality and privacy of its members. Our membership is free and is open to GIST patients and their families. Membership status can only be obtained, however, after a formal application has been screened and accepted. We do not accept anonymous members and instead ask all to identify themselves.
Our internet based chat facilities are closed to all but our own members. That permits us to exclude medical professionals, unless they are GIST patients themselves, researchers and marketers of various sorts.
We cleanse all data that we publish of all identifying information.
We never use any personal information without prior approval.
Unity: The GIST patient community is united on the need to find ways to help GIST patients survive and to ultimately find a cure for this disease. The LRG is committed to collaborate with a growing number of organizations and seeks every opportunity to do so.